Autism Spectrum Disorder in Down Syndrome: Experiences from Caregivers.

This study aimed to learn about the experiences of families of individuals with a dual diagnosis of Down syndrome (DS) and autism spectrum disorder (ASD) (DS-ASD), and to document the journey from early concerns to diagnosis and intervention. Caregivers completed an online survey describing their journey raising a child with DS-ASD. Survey responses were analyzed qualitatively and coded into categories to highlight common themes. Stereotypy, severe communication impairments, and behavioral difficulties prompted caregivers to pursue further evaluation. There was a mean 4.65-year gap between first noticing symptoms and receiving an ASD diagnosis. Several therapeutic interventions were identified as beneficial, including behavioral and communication support. Caregivers expressed frustration and described high levels of stress and social isolation. The diagnosis of ASD in children with DS is often delayed, and caregivers' initial concerns are frequently dismissed. Raising a child with DS-ASD can lead to social isolation and elevated caregiver stress. More research is needed to tailor diagnostic algorithms and therapeutic interventions to the unique needs of this patient population. Caregivers yearn for improved understanding of DS-ASD, more targeted therapies and educational programs, and more overall support.

Patient-provider concordance with behavioral change goals drives measures of motivational interviewing consistency.

OBJECTIVE: Motivational Interviewing (MI) consistent talk by a counselor is thought to produce "change talk" in clients. However, it is possible that client resistance to behavior change can produce MI inconsistent counselor behavior. METHODS: We applied a coding scheme which identifies all of the behavioral counseling about a given issue during a visit ("episodes"), assesses patient concordance with the behavioral goal, and labels providers' counseling style as facilitative or directive, to a corpus of routine outpatient visits by people with HIV. Using a different data set of comparable encounters, we applied the concepts of episode and concordance, and coded using the Motivational Interviewing Treatment Integrity system. RESULTS: Patient concordance/discordance was not observed to change during any episode. Provider directiveness was strongly associated with patient discordance in the first study, and MI inconsistency was strongly associated with discordance in the second. CONCLUSION: Observations that MI-consistent behavior by medical providers is associated with patient change talk or outcomes should be evaluated cautiously, as patient resistance may provoke MI-inconsistency. PRACTICE IMPLICATIONS: Counseling episodes in routine medical visits are typically too brief for client talk to evolve toward change. Providers with limited training may have particular difficulty maintaining MI consistency with resistant clients.